‘I want to prove someone with dementia can run a marathon’

Running long distances is not something most people would associate with someone who has dementia, but Sue Strachan is determined to prove someone with the condition can complete a marathon.

The 62-year-old, who has vascular dementia, will run next month’s Virgin Money London Marathon to raise money for the UK’s leading dementia research charity. But the retired publishing sales rep, who has already raised more than £3,000 for Alzheimer’s Research UK, is also on a mission to challenge people’s perception of dementia.

While the progression of her condition has been gradual so far, the unpredictable nature of vascular dementia means when she signed up to run the marathon she was not sure she would be able to make it to the start line. However, she has made great progress in her training and has vowed to give everything she can to complete the epic challenge.

Sue, whose nickname is ‘Strawny’ in reference to how her surname is pronounced, said:

“I don’t care what time I do it in, but I’m determined to complete it. There will be a lot of tears at the finish line and probably a few on the way round as well.

“I’m very proud that although I’ve got dementia I’m still able to take on the challenge of a marathon. I want to prove someone with dementia can run a marathon and show you can still have a good life after a dementia diagnosis. I also want to inspire people to support dementia research.”

Sue, who lives in Herefordshire with her partner Sheila and lurcher dog Saffy, was diagnosed with vascular dementia in 2014. Although there is no cure for the disease or treatments to slow its progression, her doctor suggested getting fit would be a good way to help her manage her symptoms and stay positive, so she took up running.

Sue said:

“I wasn’t a runner before, I had been a hockey player for many years. I was a goalkeeper and was only ever seen running to the bar after a match!

“I did the NHS Couch to 5k programme. I started off walking for a minute, running for a minute and built it up to 30 minutes of running. My ambition was to run a half marathon before I was 60 and I did that in October 2015. When I completed it, I said I was never going to do something like that again, but over time I realised I wanted another challenge and decided to apply for a place in the London Marathon.

“It’s been good to have something to focus on and a long-term goal. When I have time on my hands that’s when I can think too much about the future and get depressed.”

Training for a marathon while dealing with the symptoms of vascular dementia has not been without its challenges. Sue’s condition means she often gets very tired, while short-term memory problems and loss of her sense of direction means she has to carefully plan her running routes.

She said:

“One of the questions people always ask me when they hear I’m training for a marathon is do I ever get lost when I’m out running.

“I have to ensure I plot my routes before I go. I stick to the same routes around where I live. I know all the landmarks on the routes, but I often can’t remember the order they come in. However, I’ve only got lost once so far and although it was upsetting I got re-oriented and made my way home okay.”

The first signs something was wrong with Sue was when she had a transient global amnesia episode (TGA) in December 2012 and lost her memory of a whole day. After numerous appointments with doctors and tests, she was eventually diagnosed in September 2014. She has also been diagnosed with chronic ischaemia – restriction of blood flow – to the frontal lobes, which likely contributes to her dementia.

Sue, whose favourite activity for relieving stress is ‘speeding’ around on her ride-on mower in the field by her house, said:

“During that 24 hours I drove from Herefordshire to Surrey to stay with friends and I cut down a holly tree in their garden with my chainsaw. I don’t remember any of it. I just walked into the room and said ‘where am I?’.

“Doctors said I would probably recover from the TGA and should get normal function back. But after several months it became clear that something wasn’t right. I wasn’t able to articulate properly, I was struggling to find words, I was repeating myself constantly and my concentration was just out of the window. All those things led me to go back to the GP and that’s when the tests started.

“A clinical psychologist went through various tests with me over a period of three months. She asked me fairly early on ‘if you were to get a diagnosis of dementia, do you want to know?’ I thought that was a ridiculous question as I thought ‘absolutely I’ve got to know what I’m dealing with’. But when she actually told me I felt like I’d been punched in stomach. At the same time, though, I was relieved, as I knew something was wrong with me and now I could put a name to it.”

There are around 850,000 people in the UK with dementia, of which around 20 per cent have vascular dementia, the second most common form behind Alzheimer’s disease. Around five per cent of people with dementia are early-onset, those diagnosed under the age of 65.

Sue’s main symptoms are problems with short-term memory, communication and concentration. But she says when she tells people she has dementia most are surprised.

She said:

“My symptoms are not always obvious when people meet me. I think I don’t really fit people’s views of what someone with dementia is like. Each person living with dementia is different and their journeys will be different too. So if you meet someone with dementia, you’ve met one person with dementia.

“Although the progression of my dementia has been very gradual to date, there is the possibility that I might wake up tomorrow morning and not recognise anybody because of the nature of vascular dementia. There’s no cure for dementia, it’s not like a broken leg, it’s not going to heal. But although I have fears for the future, I’m generally positive and I live well with dementia.”

Kenneth Foreman, Senior Sporting Events Manager at Alzheimer’s Research UK, said:

“We are in awe of Sue for taking on the London Marathon and raising so much money for pioneering dementia research.

“Her story is a powerful challenge to the common misconception that dementia only affects the elderly. She’s proof that while a dementia diagnosis is devastating, people with dementia can lead fulfilling lives.

“The vital funds raised by Sue and the hundreds of people running for Alzheimer’s Research UK will power world-class dementia research projects to help us in our mission to bring about the first life-changing dementia treatment by 2025.”

To sponsor Sue go to www.justgiving.com/fundraising/strawny

Pictures of Sue are featured in a free art exhibition in London hosted by Alzheimer’s Research UK, which aims to challenge the misconceptions around dementia.

Reframe Dementia is a multimedia art exhibition, running 15-18 March, 11am to 6pm, at the gallery@oxo, Oxo Tower Wharf, Bargehouse Street, South Bank. It will be exploring the personal stories behind dementia and the research taking place that will change the future. Portraits, music, virtual reality, tapestries, podcasts and stunning scientific images will all shed light on people and their experiences, and the work going on to improve our understanding of dementia and find better ways to diagnose and treat the condition.

For further information about Alzheimer’s Research UK, or to find out more about fundraising for the charity, call 0300 111 5555 or visit www.alzheimersresearchuk.org